Susan Boyle has become an overnight sensation. Over 20 million people have watched her performance on Britain's Got Talent. She has been besieged by interview requests and I cannot imagine what she is going through. I truly. As one would suspect, the media has asked Boyle a host of particularly stupid and rude questions. In reply she has been as generous as humanly possible. I find the media saturation about Boyle frustrating because no one has asked the questions I consider important. For example, why is Boyle unemployed? How could someone with such an amazing voice remain completely unknown? If she tried to make it in the music business and failed how did this happen?
I sincerely hope Boyle's fame will enable others that do conform to accepted notions of beauty and normalcy to be given a chance to excel. This point was made on the blog Sexability and below is a great quote:
"All one has to do is look at Susan, her facial structures and features to know she's a bit "different," and is disabled. But not THAT disabled, obviously, as she has been able to stay at home and take care of an ailing mother for years instead of being the one cared for. Read the story of her life and it is the story of so many of our lives, it is not her difference that has disabled her, but rather societies judgement, shame and fear of her difference. Society's blatant unwillingness to give Susan a chance".
Society is indeed unwilling to give people outside the norm a chance. I doubt Boyle was ever given a real chance at success in the music business. In much the same way, people with a disability are not given a chance to enter the work force. When confronted with two qualified applicants, one disabled and the other nondisabled who do you think will get hired? The person without a disability gets the job in the vast majority of cases. In part this form of non verbalized discrimination accounts for the high rate of unemployment among people with a disability. Yes, children with disabilities are entering and receiving a education with their nondisabled peers but what happens when they turn 21 years old and age out of the system? This is a significant problem, one that has not been addressed. What I am striving to get across is that Boyle and all those that fit under the academic rubric as "the other" deserve a chance. Like Boyle, people with a disability just want a chance. If we fail at least we had an opportunity. Failure is part of life as is success but to be denied an opportunity is the real issue Boyle and disabled people encounter daily.
Sunday, April 19, 2009
Friday, April 17, 2009
On Being Ugly and Disabled
I dislike most television programs produced by mainstream networks such as NBC, ABC and CBS. I have a sharp aversion to popular talent shows such as American Idol and Dancing with Stars. These so called talent shows are based on two extremes: first, the audience loves to laugh at and see the judges rip into contestants that possess little talent. The ridicule heaped on such contestants is often mean spirited. The audience loves this and the judges comments are cutting and prompt much laughter. Seeing people become the butt of a joke is not my idea of entertainment. Second, some contestants have true ability and are thrust onto a national stage that would otherwise be impossible to attain.
Thanks to the internet I can selectively watch these talent shows. I usually view these shows when a contestant such as Scott MacIntyre who is legally blind appeared on American Idol. I find the appearance of people with a disability on these shows interesting because the mainstream media does a horrific job dealing with disability. Steve Kuusisto has noted on his blog Planet of the Blind that "American TV doesn't know how to handle disability. Accordingly it can't present real people with disabilities because in North American TV Land disability must always (and here we need to emphasize "always squared" be represented in quaint, saccharine or monstrous Victorian symbolism." At issue is never a disabled person's ability but rather how they "overcame" their particular physical deficit. The worse the deficit the better the visual--think beauty and the beast.
The beauty and the beast analogy struck me when I heard about Susan Boyle's appearance on the British program "Britain's Got Talent". To be blunt, Ms. Doyle is physically ugly. She also has an amazingly powerful and beautiful voice. However, no one knew about her voice when she walked on stage. She did not help her cause by stating she was unemployed, had never kissed a man and lived with her cat. The audience laughed at her when she appeared on stage and the judges openly mocked her. For example, Simon Cowell asked Ms. Boyle how old she was and when she replied "I'm 47" he rolled his eyes in disgust. When Boyle joked that she was 47 on "only one side of me" and shifted her hips another judge Piers Morgan, seemed to be in pain. This prompted much audience laughter. It was clear to one and all this woman was delusional--no one so poorly dressed and ugly could possess talent. After Boyle was finished singing Les Miserables I Dreamed a Dream the audience and judges looked befuddled. They were simply astonished by Boyle's voice. One judge, Amanda Holden, commented the she was "thrilled because I know that everybody was against you".
What I want to know is why was everyone against Boyle? The answer to this question is simple: it was assumed "ugly" women have no talent. Ugly women are not supposed to be gifted much less competent. Such women are supposed to become old maids forever wishing they were beautiful. They live alone and are miserable. This is of course totally wrong and it made me think that people with a disability have the same problem Boyle encountered. Society assumes people with a disability are inept. People with a disability are either physically or mentally incapable of excelling. It is assumed that all people with a disability have a singular focus--locating a cure for their disability. Christopher Reeve was a perfect example of this stereotype. The media ate up Reeve's search for a cure to spinal cord injury hook line, and sinker. They fawned over Reeve because he was the antiquated archetype of disability. Why is being ugly or disabled such an afront to others? The answer to this is social and theoretical. Socially we are part of a global capitalistic system, one that values youth, self reliance, and individualism. These traits are not associated with disability and result in something Karl Marx wrote a great deal about--alienation and false consciousness. Capitalism has a penchant for alienating members of society that are not productive. When you consider the fact 70% of people with a disability are unemployed it is easy to become alienated from others. Thus disabled people are perceived to be misfits, unable to contribute to the greater good. Yet people with a disability still want to fit in and be part of the mainstream. The effort to fit in is what Marx called false consciousness. The ability to fit in, to be like others is an illusion. In my case, I know I will never truly fit in. My difference, paralysis and wheelchair use, is too isolating. Social and architectural barriers abound. I do not foresee these barriers being eliminated in my life time. Thus like other people with a disability I have become "disabled and proud". This slogan puzzles many and I perceive it to be a metaphor. Disabled and proud as a metaphor undermines the great value placed on the ability to walk, see, and hear. I am not a failure because I cannot walk nor is my character flawed because I am paralyzed. The problem people such as myself and others with a myriad of different physical deficits encounter are largely social. It is hard to be a productive member of society when you are unemployed, have no access to mass transportation, housing is inaccessible, and stigma is attached to disability in the broadest sense of the term. These are the issues that desperately need to be addressed when it comes to disability. Yet this is what the media, my neighbors, school boards, and corporations try to avoid thinking about. Instead, pity and scorn are placed upon those that demand equality. This is why I am disabled proud--I am not afraid to assert my civil rights and bear the brunt of society's wrath. Frankly, I do not see that I have much of a choice. If I do not assert my civil rights as an American citizen who else will?
Thanks to the internet I can selectively watch these talent shows. I usually view these shows when a contestant such as Scott MacIntyre who is legally blind appeared on American Idol. I find the appearance of people with a disability on these shows interesting because the mainstream media does a horrific job dealing with disability. Steve Kuusisto has noted on his blog Planet of the Blind that "American TV doesn't know how to handle disability. Accordingly it can't present real people with disabilities because in North American TV Land disability must always (and here we need to emphasize "always squared" be represented in quaint, saccharine or monstrous Victorian symbolism." At issue is never a disabled person's ability but rather how they "overcame" their particular physical deficit. The worse the deficit the better the visual--think beauty and the beast.
The beauty and the beast analogy struck me when I heard about Susan Boyle's appearance on the British program "Britain's Got Talent". To be blunt, Ms. Doyle is physically ugly. She also has an amazingly powerful and beautiful voice. However, no one knew about her voice when she walked on stage. She did not help her cause by stating she was unemployed, had never kissed a man and lived with her cat. The audience laughed at her when she appeared on stage and the judges openly mocked her. For example, Simon Cowell asked Ms. Boyle how old she was and when she replied "I'm 47" he rolled his eyes in disgust. When Boyle joked that she was 47 on "only one side of me" and shifted her hips another judge Piers Morgan, seemed to be in pain. This prompted much audience laughter. It was clear to one and all this woman was delusional--no one so poorly dressed and ugly could possess talent. After Boyle was finished singing Les Miserables I Dreamed a Dream the audience and judges looked befuddled. They were simply astonished by Boyle's voice. One judge, Amanda Holden, commented the she was "thrilled because I know that everybody was against you".
What I want to know is why was everyone against Boyle? The answer to this question is simple: it was assumed "ugly" women have no talent. Ugly women are not supposed to be gifted much less competent. Such women are supposed to become old maids forever wishing they were beautiful. They live alone and are miserable. This is of course totally wrong and it made me think that people with a disability have the same problem Boyle encountered. Society assumes people with a disability are inept. People with a disability are either physically or mentally incapable of excelling. It is assumed that all people with a disability have a singular focus--locating a cure for their disability. Christopher Reeve was a perfect example of this stereotype. The media ate up Reeve's search for a cure to spinal cord injury hook line, and sinker. They fawned over Reeve because he was the antiquated archetype of disability. Why is being ugly or disabled such an afront to others? The answer to this is social and theoretical. Socially we are part of a global capitalistic system, one that values youth, self reliance, and individualism. These traits are not associated with disability and result in something Karl Marx wrote a great deal about--alienation and false consciousness. Capitalism has a penchant for alienating members of society that are not productive. When you consider the fact 70% of people with a disability are unemployed it is easy to become alienated from others. Thus disabled people are perceived to be misfits, unable to contribute to the greater good. Yet people with a disability still want to fit in and be part of the mainstream. The effort to fit in is what Marx called false consciousness. The ability to fit in, to be like others is an illusion. In my case, I know I will never truly fit in. My difference, paralysis and wheelchair use, is too isolating. Social and architectural barriers abound. I do not foresee these barriers being eliminated in my life time. Thus like other people with a disability I have become "disabled and proud". This slogan puzzles many and I perceive it to be a metaphor. Disabled and proud as a metaphor undermines the great value placed on the ability to walk, see, and hear. I am not a failure because I cannot walk nor is my character flawed because I am paralyzed. The problem people such as myself and others with a myriad of different physical deficits encounter are largely social. It is hard to be a productive member of society when you are unemployed, have no access to mass transportation, housing is inaccessible, and stigma is attached to disability in the broadest sense of the term. These are the issues that desperately need to be addressed when it comes to disability. Yet this is what the media, my neighbors, school boards, and corporations try to avoid thinking about. Instead, pity and scorn are placed upon those that demand equality. This is why I am disabled proud--I am not afraid to assert my civil rights and bear the brunt of society's wrath. Frankly, I do not see that I have much of a choice. If I do not assert my civil rights as an American citizen who else will?
Monday, April 13, 2009
Cumulative Impact of Disability Based Bigotry
My son and a group of friends went to the Outer Banks in North Carolina for a week. We had a great time even if the weather was a little cold and windy to sit out on the beach. Yesterday I tried to catch up with the news as I spent most of my time in North Carolina relaxing and reading one bad novel after another (I have terrible taste in fiction). Regardless, I was interested in an interview Governor David Paterson did that was broadcast by the Capital Connection while we were away. Paterson was interviewed by Alan Chartock of WAMC and revealed for the first time just how deeply the SNL skit that mocked his blindness hurt. My initial reaction was not positive--anyone elected to a highly visible public office has no grounds to complain about media bias. Mean spirited humor, biased news coverage, and viscous political attacks are the norm today. As I fell asleep last night I began to wonder if my lack of sympathy was a bit too hard edged. Paterson was not elected to the Governor's office and his performance to date has been a mix of success and failure. In short, Paterson strikes me as an ordinary man and a competent politician. But what struck me in the interview was the the degree to which the SNL skit hurt him.
Previously, through his spokesman, Paterson remarked that he can "take a joke" and objected to the way SNL ridiculed the fact he was blind. Paterson's bland reply made me wonder if he really had a heart. During the Capital Connection interview Paterson gave a clear indication of the impact the SNL skit had on him. Paterson stated that the SNL skit brought back a flood of memories--none of them positive. Like many people with a disability, Paterson was taunted and teased growing up. Play grounds, school buses, and hallways demonstrate there is a hard edge to humanity. People with a disability are easy targets and children can be shockingly cruel to each other. I have no doubt Paterson suffered and he noted:
"I noticed I caught myself in the days after the Saturday Night Live event especially since the media was asking me about it so much being a lot more careful how I moved around. Being a lot more conscious of trying to face the audience and not appear to be looking away. And being just a lot more insecure about how I presented myself when I don't think disabled people should. People are who they are. And I thought to myself, you know, I thought I had gotten rid of those demons when I was a teenager. But I guess somewhere latent in my personality was this reaction if I felt I had been humiliated."
Humiliated--that is the perfect word to describe what the SNL skit sought to accomplish. It effectively humiliated Paterson and by extension every person with a visual disability. Paterson was an easy target and his blindness just to good a target to pass up. The problem with this sort of humor is that it is never ending. Its cumulative impact is impossible to ignore and works its way into our concept of who we are. I know far too much about this as do most people with a disability. I was subjected to the same sort of ridicule and humiliation as Paterson growing up. Indeed, I am unaware of any person with a disability that escaped such abuse as a child. While I have moved on with life, the words and taunts I was subjected to left invisible scars. Thus like Paterson I often am struck by how I internalized this sort of disability based abuse. To this day, I almost never try to enter the front door of any building. I am never surprised when people think I am not competent. The rudest and most intrusive questions rarely bother me. When I teach architectural barriers in the classroom are common. Elevators, bus lifts and mass transportation hassles always occur. This is the norm for me, it is my life. I do not expect to be treated with the same respect as a person that can stand or walk and I do not assume any where I go will be accessible.
In the America, we have laws such as the ADA that are designed to make sure none of the above takes place. Heck, we have a legacy of almost 40 years of laws and legislation designed to make inclusion possible for people with a disability. Yet I encounter disability based prejudice daily, it is a common occurrence. Why does society tolerate and condone this? Most people simply do not care. Disability is not relevant to their lives. From an economic viewpoint, access is not valued. Why spend the money on ramps, elevators, or wheelchair lifts on buses when so few people need them? This is why SNL can get away with humiliating Governor Paterson. Our society does care about people with a disability. Children are taught from the moment they enter school that separate is acceptable when it comes to people with a disability. Kids with a disability arrive at school on the "special bus". Once in school kids with a disability are shunted off to "resource rooms". Parents with a disability are not included because gyms, auditoriums, and ball fields are not accessible. The message learned is not hard to miss--people with a disability are different, they are inherently inferior. Given a socially inferior status, they are free game. Go ahead ridicule and humiliate children and adults with a disability. Why even the President of the United States can make bad jokes about the Special Olympics. This utter lack of social standing, pun intended, leads to a 70% unemployment rate, segregated housing and transportation. This all takes place decades after Brown v. the Board of Education that ruled separate is inherently unequal. Paterson knows all this and wisely chose to keep hi mouth shut. Me on the other hand I am too much of a hard ass. I don't like being treated unequally and quick to point out the inequalities in life. This does not make me popular but I do sleep well at night knowing I have done my best and somehow in a small way advocated on behalf of those not willing or unable to assert them self.
Previously, through his spokesman, Paterson remarked that he can "take a joke" and objected to the way SNL ridiculed the fact he was blind. Paterson's bland reply made me wonder if he really had a heart. During the Capital Connection interview Paterson gave a clear indication of the impact the SNL skit had on him. Paterson stated that the SNL skit brought back a flood of memories--none of them positive. Like many people with a disability, Paterson was taunted and teased growing up. Play grounds, school buses, and hallways demonstrate there is a hard edge to humanity. People with a disability are easy targets and children can be shockingly cruel to each other. I have no doubt Paterson suffered and he noted:
"I noticed I caught myself in the days after the Saturday Night Live event especially since the media was asking me about it so much being a lot more careful how I moved around. Being a lot more conscious of trying to face the audience and not appear to be looking away. And being just a lot more insecure about how I presented myself when I don't think disabled people should. People are who they are. And I thought to myself, you know, I thought I had gotten rid of those demons when I was a teenager. But I guess somewhere latent in my personality was this reaction if I felt I had been humiliated."
Humiliated--that is the perfect word to describe what the SNL skit sought to accomplish. It effectively humiliated Paterson and by extension every person with a visual disability. Paterson was an easy target and his blindness just to good a target to pass up. The problem with this sort of humor is that it is never ending. Its cumulative impact is impossible to ignore and works its way into our concept of who we are. I know far too much about this as do most people with a disability. I was subjected to the same sort of ridicule and humiliation as Paterson growing up. Indeed, I am unaware of any person with a disability that escaped such abuse as a child. While I have moved on with life, the words and taunts I was subjected to left invisible scars. Thus like Paterson I often am struck by how I internalized this sort of disability based abuse. To this day, I almost never try to enter the front door of any building. I am never surprised when people think I am not competent. The rudest and most intrusive questions rarely bother me. When I teach architectural barriers in the classroom are common. Elevators, bus lifts and mass transportation hassles always occur. This is the norm for me, it is my life. I do not expect to be treated with the same respect as a person that can stand or walk and I do not assume any where I go will be accessible.
In the America, we have laws such as the ADA that are designed to make sure none of the above takes place. Heck, we have a legacy of almost 40 years of laws and legislation designed to make inclusion possible for people with a disability. Yet I encounter disability based prejudice daily, it is a common occurrence. Why does society tolerate and condone this? Most people simply do not care. Disability is not relevant to their lives. From an economic viewpoint, access is not valued. Why spend the money on ramps, elevators, or wheelchair lifts on buses when so few people need them? This is why SNL can get away with humiliating Governor Paterson. Our society does care about people with a disability. Children are taught from the moment they enter school that separate is acceptable when it comes to people with a disability. Kids with a disability arrive at school on the "special bus". Once in school kids with a disability are shunted off to "resource rooms". Parents with a disability are not included because gyms, auditoriums, and ball fields are not accessible. The message learned is not hard to miss--people with a disability are different, they are inherently inferior. Given a socially inferior status, they are free game. Go ahead ridicule and humiliate children and adults with a disability. Why even the President of the United States can make bad jokes about the Special Olympics. This utter lack of social standing, pun intended, leads to a 70% unemployment rate, segregated housing and transportation. This all takes place decades after Brown v. the Board of Education that ruled separate is inherently unequal. Paterson knows all this and wisely chose to keep hi mouth shut. Me on the other hand I am too much of a hard ass. I don't like being treated unequally and quick to point out the inequalities in life. This does not make me popular but I do sleep well at night knowing I have done my best and somehow in a small way advocated on behalf of those not willing or unable to assert them self.
Thursday, April 2, 2009
Obama: Who Does the Federal Government Hire?
The Federal Employment of People with Disabilities report was released March 31, 2009 by the National Council on Disability. And to answer the question I have titled to this post the answer is... Not people with a disability! According to the Executive Summary of the very official, long (66 pages) document this what I discovered.
In 2007 the Federal Government employed 2,608,172 people.
In 2007 only 23,969 people employed by the Federal Government had a disability.
In 2007 the percentage of those employed by the Federal Government with a disability was 0.92%
Think about this for a second: 0.92% of Federal Employees had a disability. This is staggering. Less than 1% of the people hired by the Federal Government had a disability. To coin one of the most famous lines to emerge from NASA "Houston we have a problem". Let me highlight this number:
0.92%
Is this stunning figure mentioned in a newspaper or other media outlet? Nope, not a word. Did Obama have some sort of reaction? Nope, not a word. Did CNN pick up on this? Nope, not a word. The Wall Street Journal? Nope, not a word. The TV morning shows? Nope, not a word. Worse yet, I did not think much about it until I had coffee this morning and started planning my day and thought I need to got to the post office--a place where Federal Government employees work. Then I thought about all the other places I visit where Federal and State employees work and it dawned on me: I have never, not once, ever observed a visibly disabled person working for the government. Not a one. Isn't the government supposed to reflect the people? If so, where is the largest minority group in the country? Invisible as in unemployed. Perhaps we can learn a very basic lesson here for the economic stimulus package: have the federal government hire people with a disability. Obama need not be shy--nearly 70% of people with a disability are unemployed and desperate for work. Don't worry we don't bite.
In 2007 the Federal Government employed 2,608,172 people.
In 2007 only 23,969 people employed by the Federal Government had a disability.
In 2007 the percentage of those employed by the Federal Government with a disability was 0.92%
Think about this for a second: 0.92% of Federal Employees had a disability. This is staggering. Less than 1% of the people hired by the Federal Government had a disability. To coin one of the most famous lines to emerge from NASA "Houston we have a problem". Let me highlight this number:
0.92%
Is this stunning figure mentioned in a newspaper or other media outlet? Nope, not a word. Did Obama have some sort of reaction? Nope, not a word. Did CNN pick up on this? Nope, not a word. The Wall Street Journal? Nope, not a word. The TV morning shows? Nope, not a word. Worse yet, I did not think much about it until I had coffee this morning and started planning my day and thought I need to got to the post office--a place where Federal Government employees work. Then I thought about all the other places I visit where Federal and State employees work and it dawned on me: I have never, not once, ever observed a visibly disabled person working for the government. Not a one. Isn't the government supposed to reflect the people? If so, where is the largest minority group in the country? Invisible as in unemployed. Perhaps we can learn a very basic lesson here for the economic stimulus package: have the federal government hire people with a disability. Obama need not be shy--nearly 70% of people with a disability are unemployed and desperate for work. Don't worry we don't bite.
Wednesday, April 1, 2009
An Ancient Skull Makes Me Think
It is not often anthropologists make the news and when they do it is usually an archaeologist. Today was one of those days when yet another archaeologist gets all the glory, a headline, and we cultural anthropologists are left to ponder the larger significance of their find. Here I am referring to a report published by researchers in the Proceedings of the National Academy of Sciences. A newly reconstructed child's skull of a prehistoric human who lived 530,000 years ago indicates the child had a profound cognitive disability. It is estimated the child reached the age of five years. In reconstructing the skull from many pieces researchers determined the child had craniosynostosis, a debilitating genetic disorder in which pieces of the skull fuse too quickly causing pressure to build in the brain. It is impossible to know the level to which the child was cognitively disabled but it would have been significant and required "large amounts of extra care from the prehistorical human community". The original report is not exactly a page turner but that one sentence got me thinking.
530,000 years ago prehistoric humans had a child. How we care for others, the sick, elderly and disabled, is thought to be uniquely human. This is part of who we are, a measure of our very humanity. Researchers will never be able to determine if the child in question born so very long ago was well cared for or loved. Researchers will never know what sort of society this child lived in or how these prehistoric humans lived their daily lives. This is exactly why I gave up my first love of archaeology--there were just too few answers for so many excellent thought provoking questions. But on this dreary day I cannot help but wonder about this child's life. What sort of life did this child's parent have? What did they expect when the child was born? What did they think when routine developmental stages were not reached? Did they worry? Did society support their child? Was there any stigma attached to the child when it was obvious something was profoundly wrong?
The above questions puzzle me. We have proof a child, a prehistoric human, had a profound cognitive disability 530,000 years ago. Here I sit, pun intended, over half a million years later and we as humans have yet to acknowledge the humanity of those whose bodies do not work as they were designed. We need laws such as the ADA to protect the civil rights of people with a disability. We relegate too many people with cognitive disabilities to a life in an institution. We ship off the elderly to nursing homes when their minds and bladders begin to fail. We pass assisted suicide laws in state after state and insurance companies quickly figure out how to cover this sort of "health care". We cut service to disabled people when budgets get tight. We ignore a global problem that has cost the lives of untold numbers of people with disabilities. Surely we humans, even at a time of great economic despair, can do much better given the fact we have had 530,000 years to work on this human rights issue.
530,000 years ago prehistoric humans had a child. How we care for others, the sick, elderly and disabled, is thought to be uniquely human. This is part of who we are, a measure of our very humanity. Researchers will never be able to determine if the child in question born so very long ago was well cared for or loved. Researchers will never know what sort of society this child lived in or how these prehistoric humans lived their daily lives. This is exactly why I gave up my first love of archaeology--there were just too few answers for so many excellent thought provoking questions. But on this dreary day I cannot help but wonder about this child's life. What sort of life did this child's parent have? What did they expect when the child was born? What did they think when routine developmental stages were not reached? Did they worry? Did society support their child? Was there any stigma attached to the child when it was obvious something was profoundly wrong?
The above questions puzzle me. We have proof a child, a prehistoric human, had a profound cognitive disability 530,000 years ago. Here I sit, pun intended, over half a million years later and we as humans have yet to acknowledge the humanity of those whose bodies do not work as they were designed. We need laws such as the ADA to protect the civil rights of people with a disability. We relegate too many people with cognitive disabilities to a life in an institution. We ship off the elderly to nursing homes when their minds and bladders begin to fail. We pass assisted suicide laws in state after state and insurance companies quickly figure out how to cover this sort of "health care". We cut service to disabled people when budgets get tight. We ignore a global problem that has cost the lives of untold numbers of people with disabilities. Surely we humans, even at a time of great economic despair, can do much better given the fact we have had 530,000 years to work on this human rights issue.
Tuesday, March 31, 2009
Business or Pity?
I read yet another article in the New York Times that misconstrues the basic meaning of disability. The article in question was in the business section which I try to avoid because it is so depressing to read how the economy continues to decline at an alarming and never ending rate. Regardless, the article, "Marketers Lend Voices to Show Support for the Disabled" is less about marketing than it is about charity. Apparently as the economy has collapsed people surveyed think large corporations need to be more charitable and responsive to communities. Corporations have heard the demand for a more altruistic approach to business and have decided to help. Who do corporations want to help? We crippled people! Thank God Almighty we are saved!
According to Toys "R" Us senior vice-president the company is "continually seeking to find ways to be part of the family dynamic, from birth to pre-teenage". What exactly is Toys "R" Us doing? They are supporting Autism Speaks via a campaign centered on a collection of photographs titled "Faces of Autism". Another company mentioned in the article, American Airlines, has announced plans to honor the best television commercial featuring what are deemed "positive portrayals of the disabled". The winning spot will get free air time during the airline's in flight entertainment programming.
I am not opposed to either effort by Toys "R" Us or American Airlines. But these efforts are devoid of reality in my opinion. Shopping at Toys "R" Us as anyone with young children knows is a miserable experience. More to the point, I have not seen an employee at Toys "R" Us with a disability for more than a decade. Long ago the local Toys "R" hired people with cognitive disabilities but I have not observed anyone with a disability employed by this company. As for American Airlines, I would prefer the airline spend less time thinking about the imagery of people with a disability. I for one would like to be able to enter and exit an aircraft promptly. That rarely if ever happens when I fly. A host of law suits filed year in and year out against major carriers such as American Airlines is proof positive services for people with a disability is simply not a priority. At least now, I can watch something while I wait, and wait, and wait, and wait for a trained employee to assist me on and off an airplane.
Perhaps I am too grumpy. I got sick with a urinary tract infection over the weekend and spent much of Sunday in an Emergency Room. I still feel like I got hit by a truck. Yet, I cannot help but maintain that NYT article discussed above is all about charity and money. I have nothing against charity, well maybe a little, but I am much more of a practical person. I would rather see Toys "R" Us hire a person with a cognitive disability than put a photograph on the wall. I would rather have American Airlines provide adequate service, not good service, adequate service for passengers with disabilities. Go ahead and call me a grump.
According to Toys "R" Us senior vice-president the company is "continually seeking to find ways to be part of the family dynamic, from birth to pre-teenage". What exactly is Toys "R" Us doing? They are supporting Autism Speaks via a campaign centered on a collection of photographs titled "Faces of Autism". Another company mentioned in the article, American Airlines, has announced plans to honor the best television commercial featuring what are deemed "positive portrayals of the disabled". The winning spot will get free air time during the airline's in flight entertainment programming.
I am not opposed to either effort by Toys "R" Us or American Airlines. But these efforts are devoid of reality in my opinion. Shopping at Toys "R" Us as anyone with young children knows is a miserable experience. More to the point, I have not seen an employee at Toys "R" Us with a disability for more than a decade. Long ago the local Toys "R" hired people with cognitive disabilities but I have not observed anyone with a disability employed by this company. As for American Airlines, I would prefer the airline spend less time thinking about the imagery of people with a disability. I for one would like to be able to enter and exit an aircraft promptly. That rarely if ever happens when I fly. A host of law suits filed year in and year out against major carriers such as American Airlines is proof positive services for people with a disability is simply not a priority. At least now, I can watch something while I wait, and wait, and wait, and wait for a trained employee to assist me on and off an airplane.
Perhaps I am too grumpy. I got sick with a urinary tract infection over the weekend and spent much of Sunday in an Emergency Room. I still feel like I got hit by a truck. Yet, I cannot help but maintain that NYT article discussed above is all about charity and money. I have nothing against charity, well maybe a little, but I am much more of a practical person. I would rather see Toys "R" Us hire a person with a cognitive disability than put a photograph on the wall. I would rather have American Airlines provide adequate service, not good service, adequate service for passengers with disabilities. Go ahead and call me a grump.
Saturday, March 28, 2009
Life After Spinal Cord Injury
The print media is dying because I am among the millions or people that see no reason to purchase a newspaper unless I want to start a fire. Yet I wonder and worry about how people will access the news in the future. Today, is one of the days I am very worried because I just read and watched the New York Times on line series "Patient Voices", part of the NYT Well Blog. The March 26 story was entitled "Voices After Spinal Cord Injury" and featured four men and two women that experienced spinal cord injuries. The story annoyed me greatly for a number of reasons large and small.
First, the people chosen were not your archetypical person with a spinal cord injury. Most appeared to own beautiful homes, that is expensive, replete with access features like an elevator. Others were portrayed getting into cars with an elaborate lift or wearing obviously expensive clothing. This is not the norm, indeed, this is well outside of the norm. For instance, one man, Francesco Clark, a resident of Bronxville, has been profiled in the NYT in the past. He comes from a wealthy family and is active in the Christopher Reeve Foundation. I do not begrudge these men and women their wealth. I am merely pointing out that the vast majority of people with a spinal cord injury do not possess such wealth and struggle financially.
Second, the entire focus of the story is negative. The people portrayed are considered "patients" who "suffered" a "tragic" injury in the "prime of their lives". The mere fact they are alive and not sitting in a room crying is amazing, "inspiring", and a "reminder of the strength of the human spirit". Oh, please spare me from such trite and antiquated beliefs about the nature of disability. This stereotypical portrait of disability is not just dehumanizing but at odds with reality as I have known it for the last 30 years. You see, I do not consider myself to be one iota different than any other human being than walks. Most people I know that are paralyzed feel the same way. We crippled people have rights, civil rights, and are not afraid to assert them. Get over it.
Third, sentences such as the following miss the point badly and are misleading: "Life after spinal cord injury is filled with the challenge of accepting your injury, coping with your limitations and adjusting to an entirely new way of seeing the world". I assure readers "accepting your injury" is pretty simple when you have no choice. One can feel sorry for themselves and waste their life or accept the fact one will never walk and adapt. I chose to adapt as do virtually all those that experience a spinal cord injury. Only the media likes to focus on those few that can think of nothing else but walking. Why does the media do this? It reinforces the social superiority of those that can walk and provides the rationale for exclusion. As for "coping with your limitations", this does not take long. Once medically stable, most people that experienced a spinal cord injury are self sufficient within months. Much depends upon the level of injury and, sadly, the level of health insured. Being paralyzed I can state without a shadow of a doubt is expensive. But "coping" is the wrong word to use. People, all people, adapt to different circumstances and life after a spinal cord injury is all about adapting. The big difference in adapting after spinal cord injury is that it is a one way street: people who have a spinal cord injury are expected, demanded, to adapt. Our culture does not. Sure we have laws such as the ADA but equal access for those that use a wheelchair is not valued or is perceived to be a choice. Finally, as to "adjusting to an entirely new way of seeing the world" why should the view of the world be any different? Sure I have a physically lower perspective sitting in my wheelchair but the real change is social. I see the world just fine but the way I am perceived has been radically altered. I am part of a the largest most disenfranchised minority group in the world. If I were disabled in a Third World country the odds are good I never would have celebrated my 21st birthday because I would not have survived. This is a human rights travesty few know about. In the United States most people who have a disability, 70%, are unemployed. Mass transportation remains difficult to access and few homes are constructed that are accessible. Durable medical goods cost a fortune and most people with a high level of paralysis live in a nursing home. This I assure is what changes your view of the world. The social obstacles that are built into the structure of our society are the real issue not paralysis from a spinal cord injury.
There was one positive element of the NYT story. I was expecting the comment section to be filled with observations about the men and women in question and how they had "overcome" disability. Much to my chagrin, many of those that took the time to post a comment were as critical as I was. Perhaps progress is occurring. Too bad this point eluded the NYT.
First, the people chosen were not your archetypical person with a spinal cord injury. Most appeared to own beautiful homes, that is expensive, replete with access features like an elevator. Others were portrayed getting into cars with an elaborate lift or wearing obviously expensive clothing. This is not the norm, indeed, this is well outside of the norm. For instance, one man, Francesco Clark, a resident of Bronxville, has been profiled in the NYT in the past. He comes from a wealthy family and is active in the Christopher Reeve Foundation. I do not begrudge these men and women their wealth. I am merely pointing out that the vast majority of people with a spinal cord injury do not possess such wealth and struggle financially.
Second, the entire focus of the story is negative. The people portrayed are considered "patients" who "suffered" a "tragic" injury in the "prime of their lives". The mere fact they are alive and not sitting in a room crying is amazing, "inspiring", and a "reminder of the strength of the human spirit". Oh, please spare me from such trite and antiquated beliefs about the nature of disability. This stereotypical portrait of disability is not just dehumanizing but at odds with reality as I have known it for the last 30 years. You see, I do not consider myself to be one iota different than any other human being than walks. Most people I know that are paralyzed feel the same way. We crippled people have rights, civil rights, and are not afraid to assert them. Get over it.
Third, sentences such as the following miss the point badly and are misleading: "Life after spinal cord injury is filled with the challenge of accepting your injury, coping with your limitations and adjusting to an entirely new way of seeing the world". I assure readers "accepting your injury" is pretty simple when you have no choice. One can feel sorry for themselves and waste their life or accept the fact one will never walk and adapt. I chose to adapt as do virtually all those that experience a spinal cord injury. Only the media likes to focus on those few that can think of nothing else but walking. Why does the media do this? It reinforces the social superiority of those that can walk and provides the rationale for exclusion. As for "coping with your limitations", this does not take long. Once medically stable, most people that experienced a spinal cord injury are self sufficient within months. Much depends upon the level of injury and, sadly, the level of health insured. Being paralyzed I can state without a shadow of a doubt is expensive. But "coping" is the wrong word to use. People, all people, adapt to different circumstances and life after a spinal cord injury is all about adapting. The big difference in adapting after spinal cord injury is that it is a one way street: people who have a spinal cord injury are expected, demanded, to adapt. Our culture does not. Sure we have laws such as the ADA but equal access for those that use a wheelchair is not valued or is perceived to be a choice. Finally, as to "adjusting to an entirely new way of seeing the world" why should the view of the world be any different? Sure I have a physically lower perspective sitting in my wheelchair but the real change is social. I see the world just fine but the way I am perceived has been radically altered. I am part of a the largest most disenfranchised minority group in the world. If I were disabled in a Third World country the odds are good I never would have celebrated my 21st birthday because I would not have survived. This is a human rights travesty few know about. In the United States most people who have a disability, 70%, are unemployed. Mass transportation remains difficult to access and few homes are constructed that are accessible. Durable medical goods cost a fortune and most people with a high level of paralysis live in a nursing home. This I assure is what changes your view of the world. The social obstacles that are built into the structure of our society are the real issue not paralysis from a spinal cord injury.
There was one positive element of the NYT story. I was expecting the comment section to be filled with observations about the men and women in question and how they had "overcome" disability. Much to my chagrin, many of those that took the time to post a comment were as critical as I was. Perhaps progress is occurring. Too bad this point eluded the NYT.
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